But she has other concerns, especially with her daughters, ages 7 and 12. Her lengthy hospital stay for gene therapy and the months of recovery that followed have been hard on them, she said.
“They’re not babies, but they need me,” Polanco said.
Patients ask when gene therapy will be needed during the course of their disease. If they wait too long, the illness can lead to stroke and permanent organ and bone damage. But if the illness is mild and manageable, is it better to wait? Lives in Houston 33 Year-old André Marcel Harris decided that waiting was the best option.
“I am not as sick as many others,” he said. “Gene therapy is not part of the conversation at this time.”
Shamar Lewis, 20, of Orlando, Fla., has a few concerns. These include the potential for long-term side effects of gene therapy, the cost, and the months-long process of treatment and recovery.
Still, sickle cell disease was such a burden. In his early adolescence, he spent many years out of school due to illness. He is now out of high school and interested in joining the military, but has learned that sickle cell disease is unacceptable. will be able to live on,” he told his mother, Carla Lewis.
But what would that life look like?
Teonna Woolford, 31, a sickle cell patient and patient advocate in Owings Mills, Maryland, said without the disease, patients “don’t know who they are.” . Many people worry about “exchanging the well-known problem of sickle cell disease for another problem and a general fear of the unknown”.
